Tag Archives: cauda equina syndrome

So about two hours ago, I was smelling something. Had no idea what the hell it was. I thought maybe a cord was burning, something was catching fire, checked all my wires and electrical stuff. Nothing. I go downstairs to see if my mother sprayed something, and it is coming from the hallway, or so I thought. I went back upstairs. The smell got worse. I decided to open the damn window, screw the storms. I shut the vent or opened it (no idea) on my AC. Then go downstairs again because I had to pee. I check on my mother as her sugar was low. She was fine and then I see the culprit. One of my sisters bought a Renuzit freshener thing that was pineapple and coconut. It was stinking up the house. I shut it, told my mother, put it in the kitchen, and then went back upstairs fucking swearing.

I was talking with my BFF about stuff. I asked if she was okay. She said she was but I knew she was stressed. I won’t go into it but I was glad she told me. I was getting sleepy so I told her goodnight and I will check in with her tomorrow. She said she hopes to sleep too. I lay down, and my fucking legs become stone and hurt like fucking hell. I sit up, take some magnesium as that is the only thing I can think of to calm it down. I shift my position, causing me to move my ankle. Dumb fucking move. I saw fucking stars. Still hurting so fucking bad. I waited, hoping it would settle down. It didn’t. BT med time! I start having anxiety. I am ready to call my fucking psychiatrist, but what the hell is she gonna do? It is fucking midnight. I hate this fucking shit.

All day I have been having body dysmorphia issues. I really hate my breasts. I want top surgery so damn bad. But because of my damn pain issues, I can’t have testosterone treatment, which is delaying the fucking top surgery consults and what not. If I had the money, they would be long gone! I would find a decent surgeon and be done with it. I hate my body. I hate myself more. I feel like I am a fucking idiot who should be fucking dead. My therapist said that it was reasonable that I am thinking about suicide. Who wouldn’t be if they were in my crummy shoes?

I have tried to get my head around it. Someone reported me, again, to Twitter about my talk about suicide. I have no idea what tweet it was as they didn’t tell me. If I did, I don’t remember it. I know I posted last Friday after my pain doc appt. But I don’t think I have posted anything this week. Unless the word itself, suicide, is what freaks people out and makes them report people. I don’t know. They are assholes. If they would talk to me, that would be okay. I don’t know. Sometimes I want to talk and other times, I get the concerned but I don’t know what to do with you people. And it is all fake sometimes. Pisses me off, like bother someone else with you fake sympathy or whatever bullshit you are giving me right now. I know what to do if my safety is in danger. Been down that road one too many times and don’t think that just because I talk about suicide that I don’t know the crisis number or the crisis text number or someone I can call if I feel like I am going to act on my thoughts/feelings. It’s as simple as that. Do I want to end my life, yes I do. Do I want to do it right this second? No. But the time will come when I have all my ducks in a row to execute my plan. I am working with my therapist to kind of break the cycle of overwhelm/end my life thoughts. But until then, I can still plan. It is an escape. You don’t believe me, do research.

I want the meds to work NOW. I don’t want to fucking wait. I am tired of waiting. I used to be a patient person. Now I am realizing being patient, means just that. You are a patient of some kind to someone. The pain doc, psychiatrist, physical therapist, etc. you have to wait to see them. And it fucking sucks. I am tired of waiting. I want treatment now. And dammit, if I don’t get treatment, I am going to die. Maybe not by the damn disease/condition I have, but by other means, which I don’t know exactly what they are. This dying this isn’t easy. Probably is if you have some lethal illness but not a chronic painful one.

I hate that I can’t move my damn ankle the way that it is suppose to move. It gets fucking upset with me. Going down the stairs or up the stairs aggravate it. My right ankle is sprained so it hurts because the tendons are swollen and stretched a little bit more than they are supposed to be. I also walked a lot today. And went up and down the stairs a lot to find out what that fucking smell was that was irritating my respiratory system. Set off my allergies big time. I am sending them a text tomorrow and put it in all caps. That will tell them how fucking pissed off I am. Assholes. I don’t know which sister it was, most likely the middle one but I can’t be sure. They will definitely hear about it later today.

So yesterday, I tripped over my own foot. It had gone inward and I lurched forward. I knew it was more than it because I felt like I moved something and it was painful. Later last night, my foot was hurting and I looked at my foot and it was pretty swollen. I put ice on it and the brace that I had been using for my left ankle. I couldn’t wear it long because it was annoying my Achilles problem. I called this morning to see if I could get it checked out and they had a late afternoon appt. I decided to get my haircut in the morning.

I checked on my mother and she didn’t need anything. No one was coming today, which I thought was odd. They would be coming tomorrow. I went on my way. The bus was early and I forgot the bus schedule was more frequent at that hour. When I got to the Square, the barbers weren’t open yet, so I went to Starbucks to get something to eat and have my espresso. I had 5 shots and a bagel. I didn’t write. After I finished the bagel, I went to the barbers and they were open. I was the first customer so didn’t have to wait. I was glad. I got caught up with the my buddy. He gave me back my dish. After he cut my hair, I went back to Starbucks to write for a bit. I had three hours before my appt. I didn’t want to sit and write for that long. I ordered a large iced coffee. I thought it would help keep me awake but it made me sleepy.

I decided to go home for a bit. I took the dish and my cup out of my bag. I forgot to put the cup in the sink. I changed my T-shirt as it had hair all over it. It was hot in the house. My ankle kind of went out as I was going up and down the stairs. I put the moleskin padding on my AFO as I knew the humidity was going to irritate me. It stayed on and I wasn’t irritated.

I went to the doc appt. I had a resident, who was behind. I waited. Then was called in. My feet were hot so I was grateful to take off my socks to cool them off. The doctor came in and I told him what was wrong. It was a little concerning as the foot drop was kind of new but I stressed it only happened when I was fatigued and usually on my way home. He said I sprained it and I would need an x-ray and a brace. I was hangry so I was very frustrated. CES again caused me trouble after all these years. I went to the different places. I was wearing my sneakers with Velcro straps rather than laces. It didn’t stretch that much and it was a tight fit. The brace pretty much immobilized my ankle, which was good. I was thinking of getting the same kind of one for my left so it wouldn’t cause me so much pain but I will save that for when I see whomever. The resident was going to try and move up my appt so I can get some care. I kept thinking today is Friday for some reason. I just want this week to be over.

I took the train home and waited for the bus. I listened to Pearl Jam as I was so frustrated. I seriously wanted to kick someone’s ass but there was no one. I came home and my aunt was still there. She said they just ate and why didn’t I let them know. ??? I just walked in the fricken door. I sat down in the chair and showed off my new brace. I was very hot as the humidity seemed to kick it up. The house was totally unbearable. I left my AC running. It was too hot not to. I couldn’t let my meds get hot, they would become yucky and possibly ineffective. I was hungry. I cooled off and my aunt yelled that she was going home as I was talking to my her son. She said my mother was “alone” and I said to myself, what am I, a ghost? He said that I had quacky doctors and went off. I told him good-bye. I was fed up with dealing with idiots who have no idea what I have been through and have their own idea of what is wrong with my ankles. It is all stemming from my nerve damage and that made my ankles weak, hence why I was tripping over them but because it happened 17 years ago, they don’t put the things together as I am seen as “abled bodied”.

My mother was lying on her bed when I came downstairs to make my dinner. I wanted a turkey sandwich so I made one. I had chips with it. Then I took a cool shower. I felt better after I ate. I realized then I was hangry. I told my mother what my aunt said and she laughed. I was so tired afterwards. I decided to take my meds early and go to sleep. The game had just started and the Snakes scored 4 runs. It didn’t look good. I told my other cousin buona notte, I wasn’t feeling well. In my rush to get some sleep, I forgot to take my night pain meds so I was woken up. Now I can’t go back to sleep. I didn’t plan on writing a blog today but here it is. I feel better now that I wrote about this. The pic is what I now look like with the AFO (ankle foot orthotic) and the air cast. I got to follow up with the doc to find out how long I am to wear it.

My malleolus was acting up when I got to my doc’s office. Now it is blearing. While I was in the shower, it moved some way that hurt really bad. It felt like it wanted to expand my arch or something. It felt like I had sprained it but I don’t see how that was possible as I didn’t do anything to it. It might have just been a cramp. I know I am dehydrated. I have been parched the whole time I was at the doc’s office. I didn’t have cold water, just the hot bottled water that was in my bag that was gross. I had leaked again while I was out and about. I smelled of pee so bad so I needed a shower. Tomorrow I am going to wear a diaper. I have no choice. I just hope the stupid thing doesn’t leave lint shit on my privates or in my ass. It is a cheap diaper but it works. I feel so embarrassed about it. But nerve damage is not something you can mess around with. I am not leaking more than usual or anything. I just am not feeling myself when I am full and the overflow is what is leaking. Then I get the urge to go. Past two days I have been ignoring the urge so I leak. That is life with Cauda Equina Syndrome!

I didn’t do much yesterday but sleep because I didn’t go to sleep till 5 am. I had a bad night of pain. I sent an email to my psych around 4 and then took an Ativan and that finally got me to sleep. I put my phone on do not disturb but set my alarm so I could take my morning meds. With the do not disturb, my app alarm doesn’t work.

Sox won. I listened to the game, though around the 7th inning, I was getting sleepy so tried to sleep. My foot decided to explode. It was hurting me before I laid down but then it really started to hurt. I took some Neurontin. It didn’t work. I put some lidocaine on, and that seemed to calm it down a bit.

My cousin was calling me a few times during the day. He gets anxious if you ignore him. I really think, after talking to him tonight, that he is paranoid. He seems to think his mother and sister want him to move out of his apartment so his other brother can live there. I don’t know. That seems kind of crazy to me. I don’t know where he will go. He says he can’t live on his own, but yet he is. He can do a lot of things I can. I told him I might have to go into assisted living if something happens to my mother. I can’t be on my own because I never know when my ankle is going to go out on me. I can’t keep up with house chores. I found that out Thursday when I tried to do six loads of laundry. It took a lot out of me.

I have some dishes in the sink but I was too tired to do them after I ate. I used my last cold brew iced tea bag today. I have it brewing in the fridge right now. It is probably done now but a few more hours won’t hurt. I like it to be strong. I think you can use regular tea bags but I think it takes longer to brew or maybe you use hot water and then cool it so you have iced tea. I have a hyperchill think I can use. It works great for coffee. I just make coffee like I do for hot and then put it in this cup with ice around the chamber and it cools the coffee without diluting it. It is really neat. Only thing that sucks is that it is small. You can only get about 12 oz of coffee. I like at least 16 oz.

I am listening to my country music. Cam posted a little vid that she performed in Mexico. She sang Diane in Spanish and OMG it was better than it was in English! It was just one part of the song and then she sang the rest in English. I was bummed. I had to listen to her song again and just let the playlist play.

Weather is supposed to be less humid today. We’ll see. Today is going to be the only day the weather is less humid. Monday is going to be yucko again. I’ll have to carry my sweat rag with me. I can’t help it. I just sweat a lot in hot weather because of my nerve condition.

I am going to try and sleep. I will write more if I can’t. Thanks for reading guys. It means a lot.

I have been in a kind of pissy mood most of the day. I found out that it is because I am hungry. I felt better once I had breakfast and then didn’t eat again until I got home from therapy. I was so friggen angry. Every moron was in my way. I nearly missed my stop because I lost track of the stops. I thought I got on the train where my psychiatrist is. My therapist is two stops later. I was so angry and distracted by my phone, I lost count and luckily looked up in time. No matter, the bus decided not to show up. I caught the bus down the street to catch the 1545 bus that would take me home. I am so mad! And HOT. On the way home, I saw my cousin sitting on the wall by Walgreens. I guess he stopped to relax as his prescription wasn’t ready. We talked on the way home. It had been a while since we chatted. I have his number blocked because he annoys me. Sorry but if I don’t answer my phone the first time, that doesn’t give you permission to call every two minutes for 10 minutes trying to reach me!!

I ordered food because I didn’t want to heat up the pulled pork or make something else. I was too tired and hot. Therapy went okay. He is on vacation for two weeks. Kind of weird not seeing him. He asked why. I said because we have not really had two consecutive weeks of not seeing each other. Maybe every other week but not two weeks. And in that time frame, I don’t have anything else scheduled. Mostly because the All Star game is playing, which means the Sox are off for four days. I hate that week. I miss my boys playing. I can’t believe we are almost at the midway point. We lost big time last night. Sox got their asses handed to them all because of OverPriced Price. Fricken asshole. I think he did it on purpose so he can find some excuse not to play them next time. Fricken loser he is. And a $31 million dollar one at that!

I wrote my friend an email. I sent her an email a couple weeks ago with a doggie pic of the breed she likes. But my stupid phone did something to the email I wrote and it got stuck in my outbox so the only thing that got sent was the pic, then it looked like she responded but there was nothing. I don’t know. I used my computer to send her another message with an update. I am seeing my friends that are south of Boston on the 4th. I am wicked excited. I told them I might be late as the T is running on a Sunday schedule, which means no service to the red line. I hope I can get a ride from my sister. She hasn’t answered my text so not sure what she is doing. If I can’t, I will have to go to the Orange line and transfer to the red. I have no idea how the trains are going to be running. I know I will probably need a cab home.

My back started to act up soon after I got up. Started with my right buttock hurting. I used a tennis ball to massage it. Now my lower back on the right side is hurting. Feels like the muscles want to be torn away from my spine and sacrum. I just hurt. I took some ibuprofen to help with the pain. It is all muscles. I have no radiating pain that would indicate a nerve problem. Weird thing is that I am having zaps (electric shocks) going through the sole of my left foot. It is mild but can cause me to jump at any minute. I had to put my foot at a weird angle to make it stop. Hate zaps. They are more unpredictable than flares. Come when you least expect it and just going about your business. Fuckers. I wish I didn’t have PT tomorrow but the next few days are going to be hot either way. Friday there are going to be storms so I don’t want to go out in that. I just want to hug my AC. I woke up freezing around maybe 4 this morning. I had to shut it off. Then I woke up hot. It didn’t matter as I had to be up anyways. I wish I stayed up than go back to sleep. I feel so worn out. Even my therapist said I was tired.

I was having a difficult time sleeping last night due to pain. I fell asleep sometime after 1 when I decided to sleep on my left side, where I hurt, and use the body pillow as my head pillow rather than the standard one I had been using. I slept through the night until my blasted med alarm went off. I couldn’t believe I woke up in the same position I fell asleep in. Only thing was, next time I am putting a pillow between my legs because my right buttock was hurting something awful. Tennis ball massage calmed it down.

It was hot but not blazing when I left around 0930. A guy came over talking to himself and as I rounded the corner to the bus stop, he knocked on the brick apartment building to see if the bricks were real. I sat on the bench and he told me the new condo place had fake bricks. I said I know. I told him cement was expensive. He was like really? OMG why do weirdos talk to me??? He was telling me all about the town I lived in like I cared. I agreed with him. I swore at times as the f bombs are just part of my language and that seemed to offend him. He just stopped talking. Thankfully the bus came and he said nice talking to you. I was scared he would continue talking to me all the way to the Square!

I went to Starbucks and had my breakfast and espresso. I had five shots today because it was going to be a long day. I finished but didn’t have time to write so I grabbed my espresso cup and left. Now it was hotter. I got to the train station and waited for the train. I was feeling okay. I got off my stop and started walking toward the building to have my blood drawn. I got to the second parking garage when my ankle acted up. Fuck this wasn’t good. I stopped for a bit and then carried on carefully. I went to the blood lab where my PCP’s office was but because I had urine tests also, I had to go to the lab 3 floors down. Okay, they were better phlebotomists anyway. I went and had my blood drawn. I thought I could pee. I felt like I could pee, but I couldn’t. it wouldn’t come out despite nearly drinking a liter of water. UGH. I told them I couldn’t go and that I would be in the lobby until I could go. I figured in a half hour or so, my bladder would be full. I kept drinking water. For some reason, I was really thirsty. Finally decided to try again and after a few minutes which felt like hours, I went. Urine retention sucks so bad. I cannot go on command. I have to be almost overflowing to go. Damn nerve injury.

I had about 15 minutes before I had to see my psychiatrist. I walked over to the building. I checked in and there was a little girl about 2 in the waiting room. She was so cute. She kept walking around like she owned the place. I kept saying hi, but she was shy and would go to her grandmother to hide her face. It was funny how kids are like that. My doc came and we talked about my previous lab results. She had never heard of my medication lowering my sodium after being on it for so long. I had. There was a lady on Twitter whose sodium levels were dropping and no one figured out that it was the Trileptal until she was very sick. She was in the UK. I told her about the book, which I meant to show her but totally forgot to bring it with me. I will next time.

I didn’t want to make an appt with her. She gave me a time on the day I plan on ending it and I told her I couldn’t make it. When she asked why, I lied and said I had PT. I wasn’t in the mood to bring up my suicidal thoughts and just let it be. I was more worried about my lab results.

I had sent a message to my PCP that I had the lab work done today. Around 1730, he messaged me saying that my sodium was normal. I then got a message my test results were available for viewing. I am one point above normal. I will take it. I have been eating salty foods all week. I emailed my psychiatrist about the results and that I was in a flare. I had told her I could only take one breakthrough med a day which I hope to change next week. I had to take another pill a little while ago because as I was putting my dinner dishes in the sink, my ankle exploded in pain. It was too early for my night time dose so I took the breakthrough. I am still hurting and I am not in a good mood.

I went through Twitter like I always do. One of my pain community member had posted a pic saying that the biggest risk for chronic pain patients isn’t addiction. It is suicide. OMG is this so fucking true. I had to use the bathroom so went downstairs and as is the norm, my ankle had a fit. Totally went out on me. How can I not think of ending my life? I had just taken a breakthrough med an hour or so ago. And now my ankle is having stabbing pains, the “glob” is throbbing, and my malleolus is being hammered. I just want to not be in chronic pain and that is my life sentence. I don’t want to live anymore. It just has to end, and it will soon. I can’t continue like this. I thought I could. I thought things were getting better. But like always, it was a joke. A big HAHA, fooled ya. I still haven’t taken my night meds, which means I have to get up once more. I don’t have anything to do tomorrow except find my carryon bag so I can pack for my friend’s BBQ on the 4th. It is going to be hot and I want to dip in their pool. Little things is all I have to look forward to between now and the end.